THE ABILITY TO FIGHT DISABILITY

AT an age when boys go out to play cricket in the mornings of winter holidays, or football every day in the afternoon, I used to be suddenly bedridden for a couple of days each month, down with a knee pain. I did not find it pleasant, as the chirpy voices of my friends playing in the surroundings shouted, “Goaaaaal”, or “Ho’zaaaat!”
But that was temporary. My parents found that most often the pain gained momentum during the fullmoon and new moon periods. so on other days, during such winter holidays, or everyday afternoon, I played cricket and football, and much else as well, especially badminton and table tennis.
I was especially good at cricket, in which I usually played as the opener, and played well on all surfaces... streets, artificial practice surfaces of jute fibre mats and the true, green grass field. Do remember that I am not talking of the times when young players start from well manicured grass surfaces. Those were the 1970s, in Calcutta.
Then, a year after I shifted to Delhi for studies and was in my First Year, in 1979, I would stay in a hostel in Delhi University. I would return home every weekend and on one such weekend, I found my left leg faultering. I reached home, had dinner with my parents, and went off to sleep.
In the middle of the night, there was so terrible a pain that I started shouting. My parents and sister came trooping in to my room and tried to control me, but that pain seemed to be in the brain, not just in the left hip.
To cut a log story short, by the end of that night I had turned a semi-paralytic and could not move my left leg at all.
As any parents would do, my family took me to wherever someone suggested could be found a good doctor for my kind of ailment. Nothing worked.
That winter, our neighbours, the Guptas, and my family, decided to have a weekend in Jaipur. Despite massive pain, I went with them. And I was more impressed with Jaipur than my ability to fight the pain and disability to move about with the group. And silently, even without realising, that was the end of my ‘disability’.
By 1980, a major doctor, a family friend, came visiting us and he told my mother to be prepared: “Give him three years to die of bedsores, Bhavi. This disease will progress till it attacks all his joints and put him strictly to bed,” he said.
I was still bedridden. I had some friends who would come home every evening to chat with me. And I would drag myself from the bed holding a chair to go out and meet them in the verandah of the government flat allocated to my father.
Then one day, the dragging of the chair got to my nerves... technically, you see, I was ‘disabled’, but I did not want to remain so, not after that day.
I had not walked free of a support for more than two years, but that day, I decided to try. I stood between a bedstead and a wall, and gave up the chair. I did not know my mother was watching me from behind. I shoved the chair away, made sure that I fell neither on the bed, nor against the wall, and took a few, tentative steps. I managed, and suddenly, my mother came from behind, embraced me and started sobbing joyfully.
In reality, what had afflicted me that winter night of 1979 was ankylosing spondilosis, a condition in which one loses the ‘grease’ that keeps the joint bones anywhere in the body from clashing with each other. When that happens, the bones clash, and there is massive pain.
Thereafter, I went to several doctors, till an ayurvedic doctor treated me and stopped the same disease from spreading across all my joints. I was still limping severely, and as one doctor put it, I was not walking, as ‘walking’ means that one foot, always, has to be on the floor while the other was up. “You are not walking, you are ambulating,” he said.
Since then I have had two major his-replacement surgeries, but I have worked as a journalist since I finished college in 1982, a year lost due to lack of ‘attendence’ in college, since I was ‘disabled’?
Was I? Am I?
I do not think so. I have covered communal riots in Uttar Pradesh. I have covered for 12 days the Maha Kumbh Mela in 1988-89. I have worked to do a government website on tourism in Sikkim, travelling extensively, right up to the Guru Drag-Mar Lake at 18,800 feet in the Himalayan cold desert, where nothing grows and where oxygen is at its minimum.
Yes, I cannot jump across a drain more than three feet wide, like most of my friends can. But do I need to? So I have accepted certain limitations, but I have never felt I am ‘disabled’. I also do not call myself ‘specially-abled’ a term I consider preposterous and insulting to people like me who are restricted in their functioning.
Basically, ‘disability’ is a mental condition, an affliction of self-pity. Life, you see, is made in the mind!